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  1. For the last few years, I've experienced periods where I just don't feel well and have a low-grade fever, and experience extreme exhaustion. These usually last 2-4 weeks at a time. I never paid much attention to them. This past August, my TMJ flared up badly resulting in my jaw moving out of place. My dentist prescribed a max dosage of ibuprofen for as long as necessary, and even though I disagreed, I didn't know what else to do. Fast forward a few weeks to ankles swelling, canker sores, and another episode of feeling off with a fever. The ibuprofen never touched the fever, either. When I developed petechia on my legs and feet, I was sent to the ER. They couldn't find anything, but told me to stop taking the ibuprofen and sent me to an internist for possible autoimmune issues. After extensive blood tests, I was immediately taken off Simvastatin for my high cholesterol as there were problems with my liver. After an ultrasound and further blood work, all returned to normal. But the tests results also came back positive for Limited Scleroderma. The Scl-70 was negative, but everything else was positive. I was referred to a rheumatologist but the wait was 4 months to get in. I called one afternoon in October to see how long it might really be, and they had just had a cancellation and took me in. She said I don't have Scleroderma at this point, even though I tested positive. I was put on Plaquenil to stop whatever was happening from developing further. I have another appointment in 3 months. Since then, I've noticed changes but I don't know if they're related. I itch everywhere most of the time. I started taking Allegra D daily which seems to help a lot. I still itch but not nearly as bad. My fingers have started swelling in the morning, but it goes away as the day goes on. If I sit for more than 30 minutes, I am incredibly stiff when I get up. It takes a few minutes for it to go away and I have to walk stooped over in the meantime while it works its way out. My right heel has become extremely tender and painful. According to Google, it could be Achilles tendonitis but I don't exercise, "pump bump" but I only wear flats, or possibly a result of scleroderma. My skin is fine, although I do have a few very small spots that have no pigment. I guess my question is, are any of these things symptoms of early-stage Scleroderma? If I don't have Scleroderma, what do I have? What is the diagnosis for the exhaustion and low-grade fever? Is there such a thing as autoimmune disease without a specific diagnosis? I'm just pretty confused. Thanks for any thoughts or advice.
  2. Hi, I was just recently introduced to the sclero community. My ten year old sister, Hope, has been diagnosed in the last year. She is currently working with her doctor to find a treatment method. This is all new to our family and we are still learning about a lot of the struggles that come with this diagnosis. We are now looking into the correlation between her medication (Singulair) and her diagnosis. Is there anyone who has taken singulair and was diagnosed with sclero? Would you be willing to talk with me? As I said, my family is still new to this diagnosis and are researching and trying to learn as much as we can to help her. Thank you to anyone willing to discuss this with me.
  3. I hate this disease. I know it could be worse. I know it's better than being 6 feet under. But I still hate it. It's confusing, overwhelming, effects too many areas, hard to figure out. Outside of that, I do have some decent news. I finally was accepted in to the office of Dr. Maureen Mayes. I have an apt. end of March. I have my first pulmonary apt January 29th. They ordered a high res CT scan, pulmonary function test. I had already supplied a CT angiogram that the hospital did when I went in for other heart/chest pain issue. That CT angiogram showed 6 nodes (all 4mm and under), but just 9 months earlier I had CT angio scan that only showed one node (4mm). I am not sure what to think about those developments, but my primary practice doctor assured me it was fine and probably nothing out of the ordinary (said maybe I inhaled something and that CT's show every little detail). Couple of questions: When I sleep heavy (most nights), I wake up and take a few deep breaths and feel this low deep rumble. Then it clears up after I take those initial deep breaths. But I have had what I think is random pleurisy type pains come and go over a long period of time. I also started having reflux problem this past 6 months (thank you limited systemic scleroderma). I have had a few bad colds and notice that the drainage has made me do this weird cough choke thing sometimes. Like I am unable to cough up the quick drainage so I kind of start choking on it? Does that seem weird or familiar to anyone else? Maybe even feeling like I aspirate as I am trying to cough up stuff. I feel like this all seems weird and it's just me, nothing related to scleroderma. I continue to have crazy strong Raynaud's on full hands and feet. I started taking amlodipine for the irregular heart stuff, but it's supposed to take edge off Raynaud's. Don't even know what to think about the heart issues. I see a cardiologist now but I was fine over a year ago, and now I have a tiny LBBB and a small leaky valve. I get very slow heart rates (down to the 40's-50's, not the least bit athletic) and sometimes very pronounced heart beats. Like my whole upper body feels such heavy pound with each beat, but not like a palpitation - more like a slow motion. Dumb, I know - but it's annoying and no clue why it does this. I get short of breath going up any hill or stairs, with legs that burn. Attribute that to just feeling out of shape, even though I am in my 30's and not overweight or underweight. When I swallow sometimes I feel each drink and bite of food pass by a sore spot on the right side of my lower esophagus. It's always the same spot , but so far it happens on random days for the full day. I had an Upper GI a while back and nothing showed up except a Telangiectasia looking red spot. Can that maybe be what causes pain? Anyone have one in their esophagus that can tell me more about it? I am down to one meal a day because I feel like I can't fit any more in than that. Between the gas, reflux, digestive slowness - eating once a day seems to help me feel better. Skin seems to be okay so far, but very dry (but it's always been pretty dry). I don't hardly ever drink water so I feel like it's probably a dehydration type of dryness. I can say my scars and random freckles are getting darker, but that is about it. I get my kids colds and sickness easier and it hits me harder. I pushed a heavy vacuum the other day and felt SUPER sore and tired for 2 days after like I had done 4 hours of aerobics or something . I HATE THAT. I feel so tired in general. I am going to ask Dr. Mayes if there is anything at all I can do for the energy. I started working from home and have 3 young kids in school, I can't be without energy. My dad has MS and takes a providgil, anyone here take that for scleroderma? does it help? Current Autoimmune Meds: Amlodipine lowest dose, plaquinel 200mg 2 times a day. My current rheumatologist doesn't know anything about scleroderma and is only willing to say I have Connective Tissue Disease. Based on my research, and hoping Dr. Mayes can help me with this, I have limited systemic scleroderma. Primarily based on my symptoms blood test results: Component Standard Range Your Value ANA TITER LT 1:160 >1:2560 ANA PATTERN Centromere Component Standard Range Your Value SCL-70 AB <1.0 (Negative) U <0.2 Not sure what to expect from my apt with Dr. Mayes, but trying to think of everything ahead of time and get prepared. Any ideas? I just wish this was a more understood disease. It's hard going through these weird things and then feeling alone in the weirdness. Now I need to go find some silver lining and change my attitude and count my blessings!
  4. Hi....My mom was recently diagnosed with scleroderma. We do not yet know how serious, which type, and are awaiting appointments. I have been researching online and have managed to scare myself and am looking for advice, information, and anything that you can suggest we do to help my mom. She has Raynaud's...I would say 10-20 times a day. She has tightenting of the skin, arms and hands. She has severe swelling of her joints and as well a lot of swelling (particularly ankles). She has interstitial cystitis which is basically chronic severe bladder infections... I am unsure if those are related? She is having severe allergy like symptoms which are affecting her ability to breathe on a regular/daily basis. Can anyone suggest what we should do first? Is there somewhere we should go where they would be best able to help her? Her appointment for details and to see a rheumatologist is December 9th....another month away and I am just very worried.... Any advice or info you could provide would be MOST appreciated. Big Thanks from Canada :)
  5. This is my first post on this forum. I have not been given an official diagnosis yet that I have this illness so I am trying to stay positive and I have seen some very positive stories of people getting with life as close to normal as possible. I have had Raynaud's for a number of years now but recently it has become more severe and has spread to other parts of my body, feet, nose and lips in particular. Even if I am not having a full blown attack, my finger tips remain bluish and cold and I have had my first 'hack' on one of my finger tips due to skin drying out and becoming quite thin and taut. I have taken moisturising my hands a lot more seriously since that happened. I notice other changes in my hands. The skin on my knuckles is usually quite red and ruddy in appearance and I have what I would call sausage fingers and puffy hands. I am being sent to have an oesophago-gastroduodenoscopy ( OGD) in a couple of weeks as I have near constant heart burn and acid reflux. Sometimes I find swallowing quite painful and I have the sensation of food getting stuck in my gullet. The doctor gave me tablets to take to prevent the heart burn and if I forget to take them I suffer for it that day. I notice if I have been exercising - either lifting weights or running - I can experience a horrible burning sensation in my throat. I went to the doctor before holiday because of weekly visual migraines. When a neurologist saw me, he suggested they were probably brought on by stress and tiredness, and while I know there is definitely an element of truth in this, I am curious to know whether there could be a connection between this illness and this type of migraine. The doctor ran a lot of blood tests on me before holiday and I am doing the rounds of the hospital seeing different specialists. Curiously she was not so quick to refer me to rheumatology even though the tests she ran showed positive for various autoimmune anti-bodies. She eventually made a referral for me when I went to see her recently and she saw what my hands are like during an attack. I have been to gynecology due to having very large cysts on my ovaries (not sure if there is a connection?) and haematology. Both consultants have queried whether I have been sent to rheumatology. I saw the haematologist yesterday because of raised platelets. He mentioned that he thought a lot of the symptoms and problems I have been experiencing lately could be connected and he said he was going to write to my general practitioner to strongly recommend that I see a rheumatologist. The bizarre thing is I feel fine at the minute apart from the Raynaud's. I went running a couple of days ago and my fingers felt like they had been slammed in a door. I do have a history of Grave's Disease so it would not be beyond the realms of possibility to develop another autoimmune condition. I'm not entirely sure what the purpose of posting this is! I am looking for information and my search led me to this website. When I eventually get my referral, I'll be telling my consultant how to do their job... Perhaps not the best thing in the world... Thanks for reading.
  6. Hello everyone. My name is Brooke, and I wanted to give you a quick background on my story. I was only 19 at the time, in school for cosmetology. I had been seeing a dermatologist about my acne, and she prescribed me minocycline. I had been on the minocycline for about a week, when all of a sudden in school, I passed out right in class. Upon awakening, I had a panic attack, and got sent to the ER. They assumed I was allergic to the medicine, so they sent me to my original dermatologist to run some bloodwork. I was also being tested for lupus, because apparently minocycline can cause lupus in some patients. They ran the test called an ANACP (blood test) on me. A little over a week later, I got my results yet and was absolutely horrified to find that my Scleroderma Antibodies was elevated. My level was 58, which I see here on other forums that you guys have numbers like 3.3 or decimals. Why is mine different? Anyways, I went to see a rheumatologist followed by a pulmonologist and cardiologist. All came back normal, and my rheumatologist told me to keep a close watch, but that most likely I didn't have it. I was never diagnosed. She also told me to start taking vitamin D vitamins because I was deficient. Two years later and I am 21, and just a week ago I had went to see the cardiologist for some heart palpitations ( Which turned out to be anxiety related) but he was asking what my rheumatologist had decided about my scleroderma. He offered to repeat the lab test for me, which I thought would be a good idea since I hadn't had it repeated yet. So I let him. Just today I got the lab result back and I haven't been able to stop crying. My scleroderma antibodies are 54, with the normal value being from 1-20. Going back to see the rheumatologist again. I'm so scared. Ive been so healthy all my life and now all of a sudden I have this lab result showing there is a possibility I have a disease. I guess I would just like some reassurance that I'm going to be okay and that there may be a possibility of some sort of fluke or that maybe my natural antibodies are just slightly elevated. Any help would be appreciated, I'm just so terrified and I just need to speak to someone. Thank you all so much.
  7. Hi. Just wondering if it is possible to have Scleroderma and be seronegative? I know that I have Sjogren's and have been told I may have other overlapping condition(s). I am in Pittsburgh where Dr. Metzger is located. Are any of you seeing him? Thanks much. SjoDry
  8. I'm a 25 year old female. About 3 years ago, I began to develop scar tissue on my abdomen. It showed up in the shape of a pair of lips (funny)! The next one showed up on my breast, when it covered 1/3 I finally went to the doctor. They prescribed many fungus creams, to no avail, and finally did a skin biopsy of my breast. I was told it was scleroderma. I finally went to a specialist about a year ago. My opinion of the guy is not high. He didn't run ANY tests... and I have bad teeth, always have, he asked if I've ever done meth, when I responded that I haven't, he says, "Are you sure? You know, meth can do that to your teeth."......?!? Not impressed. He said I just have morphea and don't have to worry about ever getting tested again. So, fast forward to the present, the past three weeks my eyes have become extremely sensitive to sunlight, I have to wear sunglasses until the sun goes down or else I'm squinting heavily. My joints have cracked EXCESSIVELY for probably 3 years but especially lately have become increasingly painful. I have frequent muscle spasms, especially under my rib cage (no, not pregnant. lol). I googled the symptoms tonight and found that they are very common in people with progressive systemic sclerosis (or diffuse form). I'm a single mom with a mortgage...I don't have much money right now, going through a rough patch. I'm worried that my condition is not just morphea.... What do you think, should I be worried?
  9. How could you possibly fail me? You’re supposed to be good to go from beginning to end, at least that’s what you come to expect and it’s certainly what they promote and imply if you do what you’re told! I did, I did! I went to the gym regularly, I was a jogger, I ate healthy, and I only smoked lightly for a couple of years. From the age of 30 I was acutely aware of Ma’s heart problems, first heart attack prior to 50 and to date 3 heart attacks and a dead artery (if I have to hear about the creepy dead artery that she’s walking around with in her chest so do you!) so I was always determined that I would NEVER have heart problems. Hey Amanda, how’s that working out for ya? Should have been determined never to have an autoimmune/ vascular disease instead but then I didn’t know they ran in the family prior to having scleroderma. Sometimes I feel like I didn’t know anything prior to scleroderma and now I know lots of things I don’t want to. Thanks to scleroderma I have myocardial fibrosis which put me into serious heart failure with a 2 year life expectancy in 2010. My ejection fraction was 32% (normal being 55-60%) which went up slightly in 2011 and according to my latest ECHO is now back to normal thanks to implantation of the biventricular ICD in late 2010. Clearly a good ECHO outcome, improvement is a great relief as I figured things would be bad otherwise, real bad, like “What wood would Madam like, oak or maple?” bad. If my ejection fraction had gone down/goes down despite implantation then “Madam wants maple.” So I was trying to think how do I actually feel about all this? About ending up with the one ailment I worked hard to avoid, heart failure, which I will forever be in because without the biventricular ICD my heart no longer works. About having tests every year, ECHO’s, pulmonary function test, gastroscopy and so forth, the results of which could indicate coming disaster, or that it’s actually arrived, or that, hooray for you, you’ve dodged the bullet...this time. How do you feel standing on shifting sand? In my early days I used to misquote that well known scholar F Gump saying, “scleroderma’s like a box of chocolates, you never know what you’re gonna get”. Turned out to be true. I still don’t know how I feel about all this after 5 years and the thing is it makes no difference. You’re gonna get what you’re gonna get, hazelnut caramel or coconut chew!
  10. First of all sorry if this all makes no sense, I am not good with wording haha My name is Hayley I am aged 23 and live in Bristol, UK. I have had Morphea since I was 7 years old. My mum discovered it and we started going to the hospital on a regular basis. So I have a very deep indentation on the right side of my head it is about inches (hair does cover it but have to wear hair certain way to hide the dip) I have no fat tissue or muscle in my right temple so it dips in (also have to have a heavy fringe to cover) Large area of back and collar area is also discoloured and loss of muscle and fat tissue. As you can see most of my condition is cosmetic and I have had many things done to even out the right side of my body to the left like fat collagen injections, face lift on right side, fat tissue from my legs and abdomen put into pack and front area. My condition also means that I have lost a lot of nerves in the right side of my face. My right eyebrow, nostril and part of lip is paralyzed. I have seen many doctors about this and there is not much that can be done I was bullied in little school and big school, moved schools 3 times. People used to call me dent head or jackal and Hyde because of the difference right and left side of my face. I have accepted that I look different and I try to hide it the best I can with my hair but it does affect me. A lot of people say they don't see it unless I point it out. Now I have had all my surgery I think I look pretty normal About 2 years ago I started to get blurry and double vision in my right eye. I did not think it had anything to do with the condition. Yesterday 13.07.12 I had an appointment to see what can be done about my eye...My Doctor sat me down and told me that they have found inflammation, fluid and white cells behind the effected eye upsetting for me as I never thought it would become more serious and dangerous. He has booked me in for a emergency 3 day treatment undergoing 4 steroid injections to try and get rid of the inflammation. He has scared me of many things that could go wrong and things that may happen if the steroids do not repair the eye. Having this double vision which is getting worse every day is very upsetting. I am faced with.... Not being able to work Vision is not good Not being able to drive Right eye is turning in and very visible Undergoing a lot of ongoing surgery and steroids. I am scared and worried what the future may hold. Has any one ever been through a similar situation or is going through the same thing. I have been told by my doctor that I have a very RARE case of Scleroderma as it effects my nerve system. Thanks for reading. H x R
  11. First of all sorry if this all makes no sense, I am not good with wording haha My name is Hayley I am aged 23 and live in Bristol, UK. I have had Morphea since I was 7 years old. My mum discovered it and we started going to the hospital on a regular basis. So I have a very deep indentation on the right side of my head it is about inches (hair does cover it but have to wear hair certain way to hide the dip) I have no fat tissue or muscle in my right temple so it dips in (also have to have a heavy fringe to cover) Large area of back and collar area is also discoloured and loss of muscle and fat tissue. As you can see most of my condition is cosmetic and I have had many things done to even out the right side of my body to the left like fat collagen injections, face lift on right side, fat tissue from my legs and abdomen put into pack and front area. My condition also means that I have lost a lot of nerves in the right side of my face. My right eyebrow, nostril and part of lip is paralyzed. I have seen many doctors about this and there is not much that can be done :( I was bullied in little school and big school, moved schools 3 times. People used to call me dent head or jackal and Hyde because of the difference right and left side of my face. I have accepted that I look different and I try to hide it the best I can with my hair but it does affect me. A lot of people say they don't see it unless I point it out. Now I have had all my surgery I think I look pretty normal :D About 2 years ago I started to get blurry and double vision in my right eye. I did not think it had anything to do with the condition. Yesterday 13.07.12 I had an appointment to see what can be done about my eye...My Doctor sat me down and told me that they have found inflammation, fluid and white cells behind the effected eye :( This is very upsetting for me as I never thought it would become more serious and dangerous. He has booked me in for a emergency 3 day treatment undergoing 4 steroid injections to try and get rid of the inflammation. He has scared me of many things that could go wrong and things that may happen if the steroids do not repair the eye. Having this double vision which is getting worse every day is very upsetting. I am faced with.... Not being able to work Vision is not good Not being able to drive Right eye is turning in and very visible Undergoing a lot of ongoing surgery and steroids. I am scared and worried what the future may hold. Has any one ever been through a similar situation or is going through the same thing. I have been told by my doctor that I have a very RARE case of Scleroderma as it effects my nerve system. Thanks for reading. H x
  12. Hi Jalee here! I was just diagnosed with Gastroparesis on 12/06/11. I was diagnosed via the Gastric Emptying Study.. You eat scrambled eggs with a radioactive tracer and then they use a machine that looks similar to a CT scanner to follow the eggs as it goes through your stomach.. After 4hrs if you have 10% or more food contents left in your stomach the diagnosis of gastroparesis is given (of course ruling out other things first); usually this test is only performed once the other things are ruled out! Anyways I had read that gastroparesis can occur in those with scleroderma and I was wondering if anybody else has this diagnosis and if they do what do your doctors say about it and does it complicate other issues even further..? If you develop gastroparesis from scleroderma is that meaning or suggesting that there is internal involvement.. or is it considered the same as it would be to have esophageal involvement but still be considered the limited form?
  13. Hi, I was diagnosed with Secondary Raynauds in January of 2011. It was brought to my attention by a friend of mine that my Raynauds is not the typical presentation of Raynauds. I get attacks when I am taking a bath and my feet are in the warm water. I also get attacks after my legs would get all red and there would be inflammation of my skin. It would almost seem the heat triggers my Raynauds just as much as cold does. I also get the purplish/blackish coloration on my knuckles when I am cold or in warm water, but not the tip of my fingers. I also get it on the palm of my hand nearest to the thumb digit. I am wondering if anyone else experiences this; my friend's rheumatologist said it didn't sound like Raynauds.
  14. Husband has scleroderma and rheumatoid arthritis that has been well managed with usual meds. No history of heart, lung or kidney involvement. Mostly skin, joint and esophageal problems. 10 days ago developed sudden excruciating low back pain and severe nausea. In hospital on pain and anti-nausea meds, but nobody can figure out the cause. He is in a teaching hospital where his Rheumatologist practices but she hasn't seen him yet. He had endoscopy today which showed no changes that would cause this problem. MRI of back showed nothing. I'm thinking perhaps a bowel obstruction or pseudo obstruction but doctors say no because his stomach isn't distended. He hasn't had a bowel movement in 4-5 days but they blame that on opiods. Doctors are totally stumped but he has yet to see a doctor who knows much about scleroderma. I'm not sure if there is such a doctor at this hospital. In the past he has been seen at Boston scleroderma clinic but in no shape to travel there now. Does this sound like a scleroderma related illness? Any thoughts? Anybody out there experience similar symptoms? He was very active and doing great until this. Thanks for any suggestions you might have.
  15. Has anyone else had an Esophageal Manometry? If you have, what did your results show? The nurse practitioner who did the test said that a few of my swallows showed a scleroderma type of pattern but then the others were all normal. I'm just trying to think of what would make it not allow me to swallow at some points and yet be fine with the next swallow. She thought maybe my muscle in the esophagus was getting used to the tube; however there were times when there was a normal swallow and then an abnormal one.
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